Asking for a handhold - DH in ICU

[peachgreen]

DH was taken into hospital last night with breathing difficulties. It was pretty minor, the paramedics weren't even going to take him in but we insisted. He's now in an induced coma on a ventilator. He's had 2 negative Covid tests so they don't think it's that but they don't know what it is.

I'm falling apart. He's my whole life. We have a 2 year old who is a complete Daddy's girl. I need him so much. I can't even be with him now because of COVID.

Just read your entire thread.
Hope you are ok, the drama with your dd is really not what you need but hopefully she’s good at cuddles.
It sounds serious but fixable. Cardiologists can do amazing things. I’m pleased things are generally looking up after what must have been a really awful few days.

I’m in awe of what they do in ICU after my own df nearly died there a few years ago.

I don’t notice my icd most of the time (irritates me a bit when I lie down in bed and it catches on my collar bone). I’ve had the same one for the last ten years and still have three years battery life left. I go to the pacing clinic twice a year and get it checked (next appointment on Monday) and I’ve got a machine here at the side of my bed that reads it every night and beams any problems through to the hospital so they can contact me. Honestly they aren’t that bad!

I would sooner have my little chunk of metal silently pulsing than have to remember to take medicine for ever.

My mum said exactly this and you've both made me feel a lot better, thank you.

Yes @Frazzled2207 the ICU staff are absolutely incredible. The doctor who phoned me to tell me he was being ventilated and was in a coma came in today while I was there to apologise to me for having to give me such awful news over the phone. He said he hoped that seeing him might help me process the trauma. I thought it was so thoughtful of him. And DH can't talk about the nurses without crying!

New stress is that the visiting hours for DH's new ward are 7-8pm which means being away 6-9pm ie right over DD's bedtime. I need someone she knows to come and put her to bed but it feels like such a big ask to ask anyone to do that every night and I don't really have many people I can ask. My own family are in another country and my mum is chronically disabled so can't travel easily although they're planning on coming in 2 weeks if I still need them (she has an appt with her consultant she can't miss). My cousin and best friend are both in other countries and both have young BF babies. DH's best friends live nearby and have been incredible, and have agreed to come and do it 4 nights a week which is amazing. I was hoping SIL who lives an hour away would come for 2 weekends but she has said no. She's offered to have DD at her house but I don't want DD any more unsettled than she already is and I don't really want to be away from her for that long either. Not really sure what to do. Sorry, just brain dumping - I don't really have anywhere else to vent.

Thank you @murinae that's so so reassuring

Well I still have to take betablockers even with the icd but my Dad died at 37 of the same heart condition as me and my cousin at 50 (not the same one as your DH) and if either one of them had had one they might still be alive today. It’s like my own personal paramedic keeping me safe (and no I’ve never needed it up to date). My sister has one too.

My machine in the windowsill. I hope you manage to find someone to help with your little girl.

My mum had an ICD and was reassured that if her heart starting doing something odd then it would lkick in - it gave her confidence. They are amazing little machines. Hope you sort the childcare problems soon, it sounds like a stress you just don’t need at the moment.

Those visiting hours are difficult but IME if you speak nicely to whoever is in charge of the ward they can definitely be a bit flexible

I have an ICD and compared to the rest of my heart issues the ICD is just something that is there.. Mine has a pacemaker which kicks in if my heart rate dips below a certain level and a defibrilator if it goes above a certain level (which I mercifully haven’t yet achieved....).

I don’t even notice that it’s there, and apart from some minor things you have to think about e.g. not putting your phone on your chest, it’s hardly noticeable.

Mine paces very, very occasionally, but it’s just a bit like a skipped heartbeat and then it’s gone.

Oh, and you can’t faint if you have an ICD. last year I did have an instance where my heart rate dropped and the ICD had to kick in several times before it came right. Not a pleasant experience and an ambulance was called although by the time it got there I was feeling much better and felt like a fraud. But when I mentioned it to the cardiologist at the transplant centre he said that it was likely that I was about to faint for unrelated reasons, and because the heart rate drops when you faint the ICD kicks in and prevents it from happening.... When I had my pacing check there was nothing major on the upload and i had still only paced 1% during the time between checks.

@alternativeperspective you are so kind sharing your experiences with me, it helps so much! I'm feeling so much better about it now and am almost pleased they're considering it as it will reassure me he's not going to have a heart attack in the middle of the night! It seems like a fairly simple surgery too so that's great. Thank you too @petalpower - that's the right way to look at it.

@Frazzled2207 I really hope so! Everything is (understandably) a lot stricter because of COVID but even an hour later or earlier would help as then I could still put her to bed. I just don't want her any more unsettled than she already is, you know?

It seems like a fairly simple surgery too so that's great.

Yes, so simple they tend to refer to it as a ‘Procedure’, which sounds much less daunting than ‘Operation’. By keeping you conscious, though sedated, you can cooperate when instructed to cough and laugh loudly, presumably to check lungs are clear (or something).

Hope all continues to go well, Peach, and you solve the problem with DD and visiting times.

I wouldn't be afraid to have a polite word with his nurse in charge / ward manager about visiting times. You may find they will come to a compromise with you. Otherwise I would give yourself some slack. It won't be the end of the world if dd has a few late nights watching Disney films on the sofa with one of your husbands friends for example.

Thanks @Hairyfairy01. DH is going to ask today and if he has no luck I'll go in and cry and beg! DH's friends are and have been incredible but I don't want to put all the pressure on them - but you're right, if worst comes to worst, I'll just get my friends around and they can just sit with her and watch TV. If she didn't have this sore bum it would be easier but she's very clingy and unsettled right now.

Just a quick one to say my dad's had a defibrillator for the last 15 years to stop his heartbeat going above a certain level. He's 86 and still going strong, it's been absolutely brilliant for him and he leads an active lifestyle. His is about the size of a pack of cards and he says he doesn't notice it's there. It's pretty clever technology - he has a CareLink package which downloads the data from the defibrillator every night and sends it to someone who monitors it, and contacts him if there are any issues.

It's been a good 10 years since the defibrillator had to kick in but it gives him complete peace of mind that it's there as a back-up.

I wanted to share that in case it's of any help or reassurance. Also to wish you and your husband the best and hope he's feeling better soon.

Oh, it really is simple. Before I had mine done the consultant who did it said “we do it under a local anaesthetic, and we have some fascinating conversations with people while we’re doing it.” And I was like this: But he was right.

And aside from the fact my local anaesthetic had started to wear off right about the time they were putting in the stitches, due to the fact it had taken them longer because they were trying to insert a 3rd cable, it was completely painless, you just feel a bit of pulling etc and the thought went round my head that “I’m lying here and there is some bloke playing around inside my heart.”

The scar is uncomfortable for a few weeks and he won’t be able to lift his arm above his head for six weeks, but after that he will resume normal life.

The way I think of it is that if I didn’t need one, I wouldn’t have one, so if it paces it doesn’t concern me in the slightest.

And all the stuff I’ve been through I think of as having a look into the workings of the heart we generally only read about in books or see on television, and as serious as my condition is I find it fascinating. But then my DP says I’m just sick. .

So glad your DH is doing so much better.

Can I just add advice for your daughter? My eldest had very similar issues, and we went to see a local pediatrician (not UK), who always got it sorted... it was really settle in the end. Back into nappies, a decent amount of movicol junior prescribed (gp can do this) - there's advice on dosage in the box, it's much safer than other laxatives because it doesn't cause cramps etc. In the same way.

Anyway, I really you're completely up to your ears at the moment, but honestly, just leave her in nappies, way too much going on, and then once you've been able to sort out visiting etc., ask about movicol (here youtu can get it over the counter, but UK seems prescription only).

Good luck. I realise it's not as urgent as your husband, but getting the training ticked off the list is so great.

Glad the news is good.

Okay having got used to the idea that he would have an ICD they're now saying he won't need one! He is on furosemide, the dreaded bisoprolol (!) and entresto which from what I understand is a really amazing treatment. Bit confused as to how he's got it as NICE guidelines say it's only for those with an ejection fraction of less than 35% but also that ICDs are standard for people with that level of reduction? But will ask his cardiologist if I ever get to speak to him! Very hard when visits are so short, I'm never really there for the important stuff. Sounds like a lot of his tests will continue as an outpatient so it'll be a while before we get answers. But that's fine. They're making noises about him coming home next week which is brilliant. Can't really believe it and nor can they! The ICU nurse who looked after him when he was in the coma came to see him today because she wanted to see it for herself! 😂 It looks like it's inherited dilated cardiomyopathy so we'll have to get DD tested at some point but I'm just setting that aside and not thinking about it right now.

Oh and they sorted visiting times although the ward sister did warn me I'll probably get dirty looks every time I come in 😂 massive relief though as now I can be home for DD. She's still not right but a lot better. Very cross with her nursery who still aren't using cream at every nappy change.

@lborgia thank you so much for the advice. It actually reassures me a lot as it aligns with my own thinking that right now she's just not ready and we need to have her bum sorted before we start thinking about it. She's on a sachet of laxido every day which seems to help - we had started to reduce it but I've increased it again now. She definitely has a lot of poo waiting to come out so the weekend will be fun....!

@peachgreen why do you say the dreaded bisoprolol?

That all sounds brilliant again. A bit scary for you when things are changing so often but it is still early days and they will do what is right for him as an individual. That's awful about nursery. I think that the lack of cream would be what pushed me over the edge and there would be shouting. Well die for dealing with it all so well.

@justasking111 oh just because there was some debate about it up thread! I was just joking really.

Glad you’re making progress. The assessments etc can take ages. I would speak to the cardiologist re the ICD, it’s possible that they may review that over time but don’t want to rush in and put one in just yet.

As for bisoprolol, I’m guessing he’s on a fairly low dose (about 2.5MG?) at the moment, it can cause fatigue and for many people this does subside but if it doesn’t do speak to the cardiologist. Also if he’s on one dose he may be able to take it at night to reduce side effects.

I was ok on it at 2.5MG but when they increased my dose the fatigue was horrendous and never went away. I’m not on any beta blockers at all now because of the other interventions I’ve had and other meds.

Also furosemide can cause dizziness in the beginning, but again this should pass. I’m on 40MG now and I don’t even notice it.

But I was talking to someone the onther day who was on 180MG 😱 all i can say is they must spend all their time on the loo. .

Good, you definitely need to just take all the pressure off (literally), the sensation of being nappy free can be quite confronting for children especially if they also associate it with pain/allergy.

You need to up the dose for a decent amount of time, make sure of course lots of water, not necessarily tons of fruit because that can easily cause tummy ache, maybe a bit of tinned pear?

And really, keep up that “slightly more than you think you need” dose for a couple of weeks at least, you need her to stop being able to hold on, and for her to get to a point where its really easy to go again.

Honestly, at this age, once the pressure is off, she’ll decide not to use nappies on her own much more quickly that trying with a struggle with you every day. Plus, much easier on you. Win-win!